I Am Not My Disease

By maisi

Last Updated:

1 min read

There have been, are, and will be days when the pain feels absolutely bone-shattering and soul-crushing. Trying to control the pain is like being in quicksand - the more one struggles, the more likely one will die. Practicing the principles of acceptance and commitment therapy has created space for me to BE, to defuse from my diagnosis, and begin re-redefining my life, centering on who and what are most meaningful and valuable to me.

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CommunityMember824294 Member

Hi, I was as diagnosed with AS about 5 yrs ago. I also have Vitamin D resistant Rickets. I' ve basically feel like a guinea pig honestly. Did the infusions and low dose chemo ( didn't work only made me constantly sick), Humira shots ( worked at first then other issues arose like added weight, swelling in ankles and feet along with wasn't helping) and about 2 weeks ago started Renvoq. My reason for this comment is I realize it took time for the Humira to get out of my system en from research can possibly take up to 14 weeks for the Renvoq to take affect. My question is does anyone deal with cold numbing sensation in ur feet (started with swelling, water pills seems to alleviate the swelling but sensations still there even when there's no swelling) en does it improve and/or go away or should I bring it up to my rhomatologist whom I see again in lit over a month? 
1. Rebecca C Member
 
 <inline-mention username="CommunityMember824294" user-id="9816231"/> I'm sorry you've been struggling with health issues as of late. I hope things do get better for you. I think that you really should discuss this sooner rather than later with your treating physician. It may be something different or a result of medication that could be worrisome. I have a cold numbing sensation but it is due to nerve damage resulting from a total ankle replacement due to injury. My sensation is constant. I hope you can send your physician a note on your patient portal or get in soon to talk about this bothersome symptom. Rebecca (team 
2. Doreen H Community Admin
 
 <inline-mention username="CommunityMember824294" user-id="9816231"/>, While back pain and stiffness occur in most people with axSpA, the severity and range of symptoms can vary greatly. Many in this community have discussed foot (feet) pain. You may find this article interesting: https://axialspondyloarthritis.net/living/enthesitis-heel-pain. Additionally, (as Rebecca mentioned) we always recommend bring any new or changing symptoms to your healthcare provider's attention. My best, Doreen (Team Member)
momof1 Member

I too was what we call a " gym rat." I loved the weights, loved the gym. I went most days & worked outanywhere from 1 hr to 3 hrs, depending on what body parts I was working on. Going to the gym opposed to working out at my home gym, ( consisting mainly of a weigh bench, many different weight sizes in iron weight, plus a stair climber and stationary bike for aerobics,) helped w/ my bi-polar/hypermania & ADHD. I also did yoga at home. It sounds easy but after 1 hr, sweat would pour off me. Now, Ican't do most yoga positions because of my AS. After my diagnosis of AS & the rapid inflammation that caused 1 rotator cuff and 2 hip replacements, ( still waiting for both knees to be replaced, not looking forward to it,) I couldn't goto the gym, plus COVID had just hit. But because of all the surgeries, I've had to go to Physical therapy many, many times, lol, I have every work-out band color, lol and knew how to use them. So when I'm not having a flare, I try on most days to use the bands to work out whatever body part I can. The # 1 thing to make sure of tho is making sure your form is perfect, just like w/ weight lifing. Keep up the good work & the great attitude!!
1. momof1 Member
 
 <inline-mention username="Rebecca C" user-id="2106882"/> Do only what u can, you'll get there my friend!!
2. Cindy Member
 
 <inline-mention username="momof1" user-id="4172513"/> I have bipolar disorder and ADHD also. I have of anxiety and OCD. i think it is great you are trying to do what you can for your health. Keep at it! I am on disability because of the AS and bipolar, but I think about going back to work a lot. I have three special school age kids so I do end up needing to take care of them and take time for myself as my self care is a long routine if I follow my doctor’s orders.
Lisa Marie Basile Member

Hi there! I’m so glad that you mention acceptance and commitment therapy, because it’s something I hear a lot about these days. I think when you/we all have a chronic illness, resistance and denial are at the forefront of our minds, and that’s only natural. However, learning to ACCEPT that this disease is part of my life is one of the hardest and also one of the most fulfilling things. I’m going to explore this with my therapist. Thanks for lending your positive and helpful approach, and hope you’re doing well. Best, Lisa (AS Team Member)
1. maisi Member
 
 <inline-mention username="Lisa Marie Basile" user-id="2108259"/> Links to ACT resources and/or free programs: Acceptance and Commitment Therapy (ACT) for Chronic Pain Manual This manual is based on the evidence-based treatment, Acceptance and Commitment Therapy, and includes strategies for mindfulness-based methods and other skills training. https://www.div12.org/wp-content/uploads/2015/06/ACT-for-Chronic-Pain-manual-McCracken.pd University of Washington List of Resources: https://depts.washington.edu/fammed/sixbuildingblocks/wp-content/uploads/sites/12/2019/02/Chronic-Pain-Self-Management-Resources_2019-02-06.pdf https://www.nhsaaa.net/media/2872/20170913painmanwb.pdf Radical Relief: A Guide to Overcome Chronic Pain | Return to a Full, Active Life Using Pain Science, Mindfulness and Acceptance and Commitment Therapy by Joe Tatta | Jan 5, 2021 Dr. Tatta simplifies the language of ACT and provides practical worksheets in this remarkable book, which I highly recommend. <img src="/content/images/2023/05/23/cc129243e55f8ae7d8539e97d1328e02_medium.jpg" alt="Book by Joe Tatta " class="uploaded-image"/>
Julie Vallortigara Member

Hi <inline-mention username="maisi" user-id="2108559"/> Thanks for sharing that very important reminder and also some ways to cope with AxSpa symptoms. I think for me acceptance was a big work I had to do in order to live better with my condition. I have addressed my mental health using different approaches, and therapy was one of them. I did group work and also 1-2-1 sessions with a therapist. Could you please tell me more about how you did your therapy? I am interested in finding out more about what / how other people have done it. Take care, Julie.